Siân's story: Adjusting to life with diabetic retinopathy

I felt quite proud that I was the only kid at primary school with diabetes. I took it in my stride. But when I reached my teens, I had some difficulties. I don’t think anyone knew at the time, but I was very controlling of my insulin and what I was eating. I had an eating disorder, basically.

It’s easy to see it now. I think it was triggered by being able to control something because a lot of time with diabetes, I felt out of control.

At school, I had no idea what I wanted to do with my life. I was really academic, sporty and into the outdoors. I’m determined to pursue what I want to do, regardless of diabetes. I always worked really hard to ensure it wasn’t a barrier to my ambitions.

After graduating with an English Literature degree from York University, I worked at a summer camp for children with disabilities in Canada.

When I came back to the UK, I got a job with the National Trust as a gardener. Physically, that was very tough, and it was tricky in terms of diabetes. I have found it difficult at times to know whether to make my needs known to employers. I don’t like to make a fuss.

One winter, I went to Lundy, an island in the Bristol channel that’s owned by the National Trust. It was an amazing adventure, going on holiday on my own by helicopter to this remote place for the weekend.

While I was there, a crazy storm hit, and we couldn’t get off the island for eight days. Luckily, I had taken extra diabetes supplies. 

Lundy’s so wild and remote. You’re completely at one with nature and surrounded by the ocean. I loved it.

I applied to be the island’s warden, surveying wildlife, doing environmental protection, working with the RSPB and doing visitor engagement, and I got it!

Lundy has a population of 28, so it was a strange little bubble to exist in.

My diabetes supplies were shipped from the mainland three times a week, but it’s a really harsh physical environment to live in, and my diabetes appointments fell by the wayside. I’d forgotten how important those are to keep up with, and I guess I felt a bit invincible.

In 2019, I married the ship’s purser and left the island. During the first lockdown, I was out for a run when suddenly my vision went really blurry. It was the start of retinopathy. I hadn’t been having my eye checks because I’d been on Lundy, so I had no idea. It wasn’t even on my radar that this could happen. 

The eye clinic was amazing. I had laser treatment and surgical vitrectomy, but I’m now registered as visually impaired. I used to be really independent, outdoorsy, and loved going off and doing my own thing, so it’s been a huge adjustment. 

I started spending a lot more time inside, more than I ever had before. That’s when I became an artist. I’ve always loved photography, Polaroid especially. It became a tool for me to show the way I was now seeing things. 

I applied for and was awarded some arts grants, and I started selling work. To my surprise, it’s gone from strength to strength.